Post treatment PET scan turns up new cancer cells in my lungs
I went in today for my 90 day Post treatment PET scan and it tured up new cancer cells in my lungs. I’m 64 years old and prior to this episode had never spent the night in the hospital.
My original diagnosis was likely tonsil cancer, HPV related, that spread to the lymph nodes on the right side of my neck. I completed the 7 week course of radiation with a weekly dose of Cisplatin, on April 5th, like a champ. Went in today confident that we beat this b**ch. All of my checkups went well. I received treatment at UNC hospital with doctors that are highly renowned. Everyone seemed genuinely surprised and saddened when 4 lymph nodes and one spot on my lung lit up on the scan today. My diagnosis went to Stage 4 metastatic squamous cell cancer. PS, we did, indeed, kill all of the cancer in my throat and neck.
I feel great at the moment but fear that my prognosis is dire. My radiation onchologist seems to think that surgery and radiation are not options, that immunotherapy and chemo will be the likely course of treatment as a chronic condition......
Are there hospitals or specialists that i should be getting a second opinion from regarding treatment plans? I’m only 8 miles from Duke university hospital.
Anyone else been through this recently? Am i looking at 3 month treatment courses and then three months off or am i looking at perpetually being in treatment? Will i ever be able to travel again?
I’m not even sure what to ask at this point, I’m feeling pretty sad right not after beginning the day feeling like a winner!!!
Comments
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Hello Chill,
Hello Chill,
I am in North Carolina at Wake Forest University School of Medicine and Comprehensive Cancer Center. We are the #1 Ranked Comprehensive Cancer center in this state, we are ahead of Duke and Chapel Hill. If you would like I can Private Message you and we can talk very specifics, doctors surgeons, etc. Our head & Neck team is very highly ranked.....
Glad you are in North Carolina!
LitlCJdoll
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Thank you, I PM'd you......LitlCJdoll said:Hello Chill,
Hello Chill,
I am in North Carolina at Wake Forest University School of Medicine and Comprehensive Cancer Center. We are the #1 Ranked Comprehensive Cancer center in this state, we are ahead of Duke and Chapel Hill. If you would like I can Private Message you and we can talk very specifics, doctors surgeons, etc. Our head & Neck team is very highly ranked.....
Glad you are in North Carolina!
LitlCJdoll
Thank you, I PM'd you......
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Chillg8r Thinking OF
You as you contemplate these results. I am figuring you had a PET scan before you started treatment and it only showed the area that was treated as having cancer, no spots on lungs. So I am figuring new cancer they are seeing in your lung, and thankfully only one spot may have been there but too small to detect. If there was cancer in the nodes in your neck may be the same case they were too small to show. But you would think the treatment in the area would have cleared all the node cancer. If you don't mind I think I would get a second opinion at this point. The hospitals can share records and see all your scans and history. I am not sure why your docs are ruling out surgery as there are many on here that have had lymph node removal in what they call a radical neck dissection. I myself have had lymph node cancer but mine was not encapsulated in the node and had spread into tissue which made it more involved of an operation. That is the key to if they operate to get the bad lymph nodes out while the cancer is still contained. I can imagine how you feel figuring all that treatment and you would be good. So what we say on here is NEGU (Never Ever Give Up). So stay strong and keep positive as much as possible, and if you can get a second opinion and take heart the immunotherapy these days is very promising. I have a neighbor lady who has been taking immunotherapy for several years. It sounds like you have good docs and that they are very surprised to see this result. My sister also had a small spot on her lung and they watched it for years till it started growing and then used I think a thing called cyber-knife on it which is more accurate radiation. I myself have a small node on my liver and lung they are watching. They may not grow or they may but many times on some of this stuff the docs take a wait and see. Ask your docs if it is possible at all that the scan is wrong. I have heard folks talk on here of scans showing something and on the next scan not. A second opinion would be good and they will match or maybe not. And another hospital may have a different approach as to moving forward. If you can take someone else with you to all doctor meetings you have now and if you get a second opinion and a tablet and paper for notes and record with video and or voice your meetings because we can forget or confuse things in these situations and there is a lot going on. A good app for voice is called just that "Voice Recorder". So I have rambled a bit here but I hope there are some things that help you-Wishing You The Best-Take Care-God Bless-Russ
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Thank you for your kind words
Thank you for your kind words Russ. The PET scan revealed that the cancer in my neck is gone so surgery there is not necessary. The cancer is now in 4 lymph nodes in my lungs as well as one spot in the lung tissue itself. I have an appointment with an Intervention Pulmonary doctor on the 20th, he may shed more light on what lies ahead.
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I had same, HPV+ right tonsil
I had same, HPV+ right tonsil, currently 4 weeks post treatment.
Sorry to hear about your scan, but considering how you toughed it out through the brutal treatment and the medical capabilities these days, I would still remain positive. Like Russ says, NEGU! YOU GOT THIS!
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The positive news that willSwampysteve said:I had same, HPV+ right tonsil
I had same, HPV+ right tonsil, currently 4 weeks post treatment.
Sorry to hear about your scan, but considering how you toughed it out through the brutal treatment and the medical capabilities these days, I would still remain positive. Like Russ says, NEGU! YOU GOT THIS!
The positive news that will hopefully support you is that the treatment I received, which is the same Treatment you underwent, totally killed all of the cancer in my neck. If not for the unpredictable and random spreading I would've received great news yesterday! That will most likely be the case for you so congratulations for getting through the treatment........
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Chill
Cancer decided it was boring just hanging out in my throat and decided to show up in my right lung nine years later. I was lucky because they found it by mistake on a CT Scan for a hernia and I only needed five high doses of radiation and it was gone. I am thinking they found yours during the early stages and like me treatment will be a walk in the park compared to throat cancer treatments. A second opinion wouldn't be a bad idea.
StayPositiveStayStrong
Jeff
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Jeff, that would be great! My
Jeff, that would be great! My radiation oncologist, who informed me of my situation, has ruled out radiation and surgery. He opined that this would best be managed with immunotherapy and chemo drugs, but I'm not sure, at this moment, why.
I definitely want to get a 2nd opinion, and will, as soon as we meet with the oncologist ad see what the team at UNC recommends.
THANKS for your positivity! Everything little bit helps!
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went through something very
went through something very similar. 90 day PET and was told it had spread to my heart, lungs and back of my neck. Was told it was 'very bad' and that they would come up with a plan to delay the inevitable.
15 days later a thoracic surgeon had me retested and the results? ..... zero cancer! Apparently the PET lit up from infection that had since gone away.
I actually recorded the doctor telling me the 'bad news'
Have you had a confirmation test? I hope the same happened to you.
im now 4 years post and life is completely normal now.
Good luck.
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OKC I RememberOKCnative said:went through something very
went through something very similar. 90 day PET and was told it had spread to my heart, lungs and back of my neck. Was told it was 'very bad' and that they would come up with a plan to delay the inevitable.
15 days later a thoracic surgeon had me retested and the results? ..... zero cancer! Apparently the PET lit up from infection that had since gone away.
I actually recorded the doctor telling me the 'bad news'
Have you had a confirmation test? I hope the same happened to you.
im now 4 years post and life is completely normal now.
Good luck.
This story and I think it holds a great lesson.
I guess they were reading the scan the way they saw it and it looked like cancer but the thoracic guy said this can happen that infection can mimic cancer.
Why would a scan not be able to show the difference between infection and cancer? I guess they just can't it depends on the reader.
So for anyone getting a scan result that just doesn't seem right have it reread, have it rescanned to be sure one way or the other.
I would be willing to bet there have been some others like you around the country and over the years that decided to go home and catch things up and live the rest of their lives till the cancer got to them and to their surprise were still livin 5 years later with no problems.
So fight this cancer every step of the way.
And NEGU (Never Ever Give Up)
Wishing You The Best OKC-Take Care-God Bless-Russ0 -
I had a biopsy done lastOKCnative said:went through something very
went through something very similar. 90 day PET and was told it had spread to my heart, lungs and back of my neck. Was told it was 'very bad' and that they would come up with a plan to delay the inevitable.
15 days later a thoracic surgeon had me retested and the results? ..... zero cancer! Apparently the PET lit up from infection that had since gone away.
I actually recorded the doctor telling me the 'bad news'
Have you had a confirmation test? I hope the same happened to you.
im now 4 years post and life is completely normal now.
Good luck.
I had a biopsy done last Thursday for confirmation, I sure hope that I have as good news as you had. Keeping my figers crossed. Sometimes its better to be lucky than good....
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Chillg8r I was wondering how
Chillg8r I was wondering how things are going with your treatment decisions. I had a Pet/Ct scan yesterday and the spot found on my lung by Pet and Ct scan has grown by 1.9 mils in 7 weeks. The Ent doctor rang me and gave me the good news. He said he will discuss my results at the MDT meeting tomorrow and call me. The report recommended I have a biopsy to confirm and that he was going to make an appointment for me to see the pulmonary specialist. Any info would be greatly appreciated.
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So I havent yet been approved
So I havent yet been approved for the clinical trial I'm trying to get into, apparently my white blood cell count is low. I am getting some labs done again tomorrow and if that goes well then I'll begin the trial on Thursday. If not then I'll start treatment with Keytruda asap. What a roller coaster!
Its very strange, I feel relatively great and yet I have such a bad prognosis.....
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I Would Guess
There are a lot of hoops to jump through and paperwork and approvals involved with a clinical trial I don't know but I am sure it is frustrating waiting and it drags out a little more.
Then throw in the low blood count and another small delay.
I know where you are at we want to get this done and get cancer out.
You will come out ok and sometimes these delays work for the good not always.
I am glad they are starting Keytruda and not waiting on the clinical trial beyond a certain point.
I also know how you feel when you say you feel great, so did I till I got a sore throat in 2012-throat cancer.
Then a sore spot on the tongue 5 years later-tongue cancer.
Then a year and a half later a sore neck-lymph node cancer-not capsulated in the node starting to spread into my body.
We don't know something is going on and feel fine till cancer affects something enough to let us know.
So yours hasn't let you know yet so hopefully that means they are way ahead of it.
Take Care-God Bless-Russ0 -
immunotherapy
I also had tonsil cancer stage 4 from hpv. After 7 weeks of radiation and kemo it was all gone. One year later it metastisised to my lung. It was taken care of with pinpoint radiation and no cancer for another year. new cancer nodules about a year later. My doctor started me on Keytruda immunotherapy and after nine weeks everything reduced by at least 50%. I was stable for a year and a half but now one of the nodules is growing at a very slow rate 1-2 mm every few months.We are watching it and if it continues to grow we will discuss the next step. All my treatment has been done at MDAnderson in Houston I have complete faith in them and it sounds like your doctor is advising the same treatment. Good luck and never give up hope.
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How debilitating was therenegade80 said:immunotherapy
I also had tonsil cancer stage 4 from hpv. After 7 weeks of radiation and kemo it was all gone. One year later it metastisised to my lung. It was taken care of with pinpoint radiation and no cancer for another year. new cancer nodules about a year later. My doctor started me on Keytruda immunotherapy and after nine weeks everything reduced by at least 50%. I was stable for a year and a half but now one of the nodules is growing at a very slow rate 1-2 mm every few months.We are watching it and if it continues to grow we will discuss the next step. All my treatment has been done at MDAnderson in Houston I have complete faith in them and it sounds like your doctor is advising the same treatment. Good luck and never give up hope.
How debilitating was the pinpoint radiation? My team of Dr's ruled out chemo and radiation immediately saying we would just be playing a game of whack a mole. But the cancer showed up in my lungs at my first pet scan after the initial treatment So my situation was different than yours....are you looking at restarting Keytruda or at clinical trials?
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Labs went well, I passed the
Labs went well, I passed the test. I’m now approved for the clinical trial I was trying to get into. Whew.....I needed to get my white cell count up, took a ton of Vitamin C and it worked......so now I begin a treatment that consists of Keytruda and some sort of HPV vaccine related drug in combination. We're hopeful that this cocktail is the right one. ? Cheers!
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